Here is my blog on communication with Thomas. This blog means so much to me as it demonstrates how much we and Thomas have achieved and how much progress he has made in communication:

I’m so immersed in the world of Thomas now that I can’t be sure what my perceptions would have been about communicating with a child like him. I’m guessing though that if I knew a child was non-verbal and didn’t have the ability to sign or write or type, and had severe learning difficulties that I would have thought that there really wouldn’t be a way for them to communicate. Is that therefore what people think of Thomas? Do they feel pity for him and us?

Thomas can definitely communicate through smiles 

 Don’t get me wrong, there are times it hurts that Thomas won’t ever tell me he loves me or wish me happy birthday but I know that he loves me. I can see it in his face. I have learnt a huge amount about communication since having Thomas and I’m learning more all the time.       

For a neurotypical child the non-verbal stage is over in the blink of an eye. We don’t really notice the subtle beginnings of communication. I didn’t fully notice these with my daughter but now I’m finely tuned to them. How much did I really appreciate it when my daughter began to anticipate? But it’s a big thing with Thomas. Thomas reacting to certain thing before they’ve happened, like laughing, demonstrates he understands what’s to follow and when it’s laughter he’s excited about it. It made us so happy when we first realised. We also did get quite a giggle at one of the earliest signs of this, which was Thomas recognising the toothbrush and remembering he didn’t like his teeth being brushed. He’d move his lips in to cover his teeth a little! Now he’s moved on to recognising the words “brush teeth” so he does it when I say that. 

Thomas has also always enjoyed tickles and we would hold our hands above him and wriggle our fingers before we tickled him. He then started giggling just from seeing our fingers. I probably did similar with my daughter and never thought much of it, but with Thomas, it was pretty huge.

Anticipating tickles

 We’ve built on this using sensory stories. These are short stories which have a sensory stimuli applicable after each line. I discovered those written by Joanna Grace a few years ago and we have bought a few of them. After a few listens Thomas clearly learns them and I can see as I read the line that he is beginning to anticipate the stimulus. With “Puddle” I dip his toe in a bowl of water and as I read I see his foot start to twitch with anticipation. With “Dream”, which I read every night before bed, he begins blinking before I brush a ribbon over his face and giggling before I tinkle the chimes.

A clinical psychologist has just begun working with Thomas using PACT (Paediatric Autism Communication Therapy). This has been developed for non-verbal, autistic children but they are trying it with Thomas. I get filmed interacting with him and we discuss it. It makes me quite self conscious but it’s fascinating. It’s about looking for subtle behaviours etc and learning about what Thomas may be communicating, such as if he may be asking for more or to stop. It’s really early days yet but it’s really exciting to to learn something new and try something different.

Thomas has also been making huge strides in communicating through eye pointing. This is using high tech and low tech equipment. He has an eye gaze system, which picks up his eye movements with a camera as he looks at a screen, so it reacts in the same way as a touch screen device like an iPad. Thomas is starting with the basics in learning how looking at the screen has an effect on it but he’s also started some basic communication. He can indicate “Stop”, “More” and “Different” and I have developed activities he can play with others such as “Thomas Says”, where he can choose to say “Thomas Says” then make a choice of things like “tickle me”, “clap your hands” and “rub my head”. He also has another screen where he can ask me to blow bubbles, bang a drum or tickle his head with a head massager. Thomas has a new Speech and Language therapist now and I’ve been working with her and his school on developing his use of the eye gaze with new ideas. I’ve just created a screen for Circle Time at school where Thomas can now say “Good morning” to his teacher, one-to-one and friends. We hope to develop this further with photos of each of the children on it if parents give permission. Thomas is in a special school but integrated with a group of children of other abilities who are all verbal. Using this equipment means Thomas can take a further role in group activities and connect with his peers. 

Thomas choosing “More” 

 We also use low tech equipment with Thomas for eye pointing. He has an e-tran frame which is a sheet of transparent plastic onto which symbols, pictures or words can be stuck using Blu-Tak or Velcro. I have to confess I’ve focussed more on the eye gaze, as the e-tran frame requires my judgment of where Thomas is looking. This isn’t always obvious, as Thomas doesn’t always make it clear by looking fixedly at the image, and he also has a squint. I’ve therefore lacked confidence in using it but he’s done amazingly well with it in school He’s making choices between 4 objects and they’ve been teaching him colours and shapes. With the input of his latest Speech and Language Therapist and the psychologist I am now using this more and I’ve been busy photographing Thomas’ toys and finding images to represent his favourite stories, which I’ve then laminated. Thomas can now choose his bedtime story! (The Gruffalo is a favourite).

The e-tran frame and Thomas listening to his choice 

I’m going to blow my own trumpet here, which I don’t often do. I often feel I don’t do well enough but I do know, that whilst there are some great people involved with Thomas now, a lot of it wouldn’t have happened without me pushing for things. He was without a teacher for the visually impaired for a good couple of years, as his own teacher was qualified as one but she went off sick and then left. I had to make enquiries and fight to get the Local Authority to send one in to see him. The eye gaze and e-tran frame came about from me going to an exhibition and speaking to Smartbox who agreed to give Thomas a trial of eye gaze equipment. Things snowballed and he was given the e-tran frame because the NHS wouldn’t fund eye gaze. We eventually got eye gaze equipment as I applied for charitable funding. (Some awesome friends then did some fundraising to contribute to it). 

I’m not sharing the above to suggest I’m amazing or that I should be praised but to make people aware that it’s often down to the parents to secure what’s right for their child and it shouldn’t be. Communication is a basic human right. Everything should be done to provide all people with a means to do that. Children like Thomas shouldn’t be forgotten because they can’t communicate in the usual ways. This is why I do what I can to raise awareness of the Core and Essential Service Standards for Supporting People with PMLD (Profound and Multiple Learning Disability). These Standards include standards on Communication and the aim is they should be adopted by all agencies and organisations working with people with PMLD. One day maybe it won’t be such a battle to give children like Thomas their voice.

 

Shared with permission from Can Do Ella (Please visit this link to view the Standards)

Read more of Lucy's blogs at Riding on a Star or on her Facebook Page, and read more from our Family Fund Bloggers here